Little Bella has taken the hearts of our family and everyone that meets her. She is our 2nd DS adoption, and we want to share her story with all.

Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Thursday, April 16, 2009

Update

After working for an hour and a half, they were not successful at placing an aterial line. They did get the central venous line though.

The attending came around and I jumped. We talked about Bella. We talked about long term. This is not a life. Taking six hours to recover from a bath is too long. Desating to have a bowel movement is not good. I talked a lot. He listened. Bless him. Then we talked. We talked long term. He has no crystal ball, but we looked at her “life” and what we can expect. We talked about the impact of Bella living in the hospital on our family. We talked trachs and g-tubes.

A team will be called together to discuss Bella and what would be the best for her. Living from crisis to crisis is not how I want to live. Finding ways, even drastic ways, so that Bella can go home and LIVE A LIFE is what I am seeking. I want Bella to live as full of a life as possible. I don’t see that happening living at Texas Children’s Hospital. The doctor was astonished at two things. One that I knew so much about these procedures. I have many Moms with kids with DS that are sharing their knowledge and experience with me. (THANK YOU!) And two that I was being so proactive. I think a long hospital stay and love does that. We love you Bella. Hang in there sweet girl.

Oh Shelly, This is Joyce. I can hardly see the keys to type my eyes are so heavy with tears, because I so remember the heartache each time they called us in the middle of the night or greeted us at the door to tell us that Sarah had to be reintubated. It seems like such a setback. I learned to realize it was only to help her little body grow stronger.

We are praying with all our might that God will give Bella's doctors the strength and guidance to create the best plan of care to she her through these difficult hours. And to help your young children understand the best they can that better days are ahead.

I found your blog through Sarah's but see that we have more in common than Ds (I am also LDS). I looked at several of your blogs...and you have a lot! :) You have a beautiful family and I love that you followed your heart with adopting two beautiful girls! My prayers and thoughts will be with Bella! I enjoy following your story.

Oh little Bella.You ARE a fighter.You are loved and prayed for by many.And so loved by your family.That mommy of yours is a fighter too.She will continue to fight for you and fight for what is best for you and in the mean time ... regain your strength sweet little love.Shelly,as for g-tubes,I think I mentioned before,Zoey's only ticket out was a g-tube.Not all bad once you get use to it and in crisis times,a Godsend.Sending you peace and strength as you continue this journey with Bella.I am reminded of something that was said to me in Zoey's early days and it was this:I was in the hallway.Overwhelmed by the happenings and a doctor stopped and asked me if I was alright.I said sure.I was just trying to figure out how we got here,to this place of uncertainty and how we were going to find our way out and she said.. one day Zoey will show you the way and answer the whys.Bella will do the same.Promise.

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time